ME/CFS (like other PAIS such as post-COVID and, for example, persistent symptoms after Lyme disease, sepsis, or Q fever) is a serious, chronic, multisystem disease. ME/CFS patients have long been fighting for recognition of the disease and more research into its underlying causes and possible treatments. Many doctors still tend to consider ME/CFS as a mental illness, which used to be the common approach before it was discovered that ME/CFS is a multisystem disease.
The NMCB recognizes ME/CFS (and other PAIS) as biomedical diseases and aims to enable more research into their causes and treatment.
Source: Health Council 2018, no. 2018/07
ME/CFS and post-COVID patients experience persistent and severe exhaustion. In addition, symptoms worsen even after minimal mental, physical, emotional or social exertion – something known as “post-exertional malaise” (PEM).
In addition, many – especially the severely ill – experience Orthostatic Intolerance and/or Postural Orthostatic Tachycardia Syndrome (POTS). These conditions cause you to experience symptoms or a fast increase in heart rate when going to an upright position. This causes patients to feel dizzy or faint, which makes them partially or entirely confined to bed, drastically affecting their daily life.
ME/CFS and post-COVID have a profound impact on both patients and society. Nevertheless, much is still unknown about the causes and possible treatments. Therefore, more research is vital.
As described in the NICE guidelines (2021), the severity of ME/CFS (and this also applies to other PAIS such as post-COVID) can be divided into four categories. Individual symptoms may however vary in severity. The definitions below provide a guide to the impact of the symptoms on everyday functioning.
People with mild ME/CFS can look after themselves and do some light household chores (sometimes with support), but may have problems with mobility. Most are still working or in education, but to do so they have probably stopped all leisure and social activities. They often work fewer hours per week, and need extra days off and weekends to cope with the rest of the week.
People with moderate ME/CFS have reduced mobility and are limited in all daily activities. They may experience peaks and troughs in the intensity of symptoms and in their ability to perform activities. Mostly, they have stopped working or studying. They often need daily rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally of poor quality and disturbed.
People with severe ME/CFS are unable to do any activity for themselves or can only perform minimal daily tasks (such as washing face or brushing teeth). They have severe cognitive problems and may depend on a wheelchair for mobility. They are often unable to leave the house or have relapses when they do. They spend most of their time in bed and are often extremely sensitive to light and sound.
People with very severe ME/CFS lie in bed all day and depend on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people cannot swallow and need tube feeding as a result.
Source: NICE guidelines (2021)
